Post by redheadbaker on Jun 13, 2013 7:17:23 GMT -5
It's a local story, so it's all over our news, not sure if it got national attention.
A 10 yr old girl, Sarah, has cystic fibrosis, and waited 18 months on the pediatric list for new lungs. Pediatric lungs are rare, only 20 were available last year.
A law said that she could receive adult lungs, but only after they were offered to everyone on the adult list, even people whose conditions were not as serious as Sarah's.
K. Sebelius refused to intervene, but agreed the policy should be debated. Sarah's condition worsened, she was placed in a medically induced coma, and given days to live.
A Philly judge issued an injunction, ordering that she be placed on the adult list earlier this week, and she got a lung transplant last night.
Hhmm, all my years of watching ER and more recently Grey's, and I've never heard of that law or regulation. I'm glad it worked out for her; I can't imagine what that was like for her & her family.
I've seen it on national news - it's awful for her and her family and I'm glad that she received a transplant, but I am very uncomfortable about government intervention in this process. There are reasons why they don't typically use adult lung donations on recipients under 12.
I've seen it on national news - it's awful for her and her family and I'm glad that she received a transplant, but I am very uncomfortable about government intervention in this process. There are reasons why they don't typically use adult lung donations on recipients under 12.
I'm uncomfortable with the government being involved in the process at all.
Post by redheadbaker on Jun 13, 2013 7:38:37 GMT -5
The family made it very clear that they didn't want preferential consideration given to Sarah. They wanted all children under the age of 12 to have the same chance that people 12 and older (on the adult list) have.
Post by heliocentric on Jun 13, 2013 7:41:21 GMT -5
Does anyone know the reason the rule was in place to begin with? My mom was on the kidney transplant list for years. While it was a very tense time, I always felt like it was a fair process designed to get the best outcomes for the most people. If that's not the case then it should definitely be reviewed, but the idea that getting some PR backing can improve your odds upsets me. While it's wonderful for that girl and her family, it does mean someone else won't get a transplant. Sadly, donor organs are not an infinite resource.
Of course, I can totally empathize with them and understand why they would challenge the process. Without understanding the reasons for the rule, though, it's hard for me to say the rule is flat out wrong.
The family made it very clear that they didn't want preferential consideration given to Sarah. They wanted all children under the age of 12 to have the same chance that people 12 and older (on the adult list) have.
Sent from my DROID3 using proboards
Well, I think eveyone wants that. But it isn't going to happen. I mean you can't put the lungs of someone over the age of 12 in 3 year old you know? I am glad her life has been saved. However, I think organ donation has to abide by strict rules that can not bend to the will of a public relations campaign. Otherwise, you sully the process.
The family made it very clear that they didn't want preferential consideration given to Sarah. They wanted all children under the age of 12 to have the same chance that people 12 and older (on the adult list) have.
Sent from my DROID3 using proboards
Well, I think eveyone wants that. But it isn't going to happen. I mean you can't put the lungs of someone over the age of 12 in 3 year old you know? I am glad her life has been saved. However, I think organ donation has to abide by strict rules that can not bend to the will of a public relations campaign. Otherwise, you sully the process.
That was the reasoning behind the rule in the first place. But I saw an interview with a doctor on the news who said that advances in medicine have made it possible to take pieces of adult organs and "size them down" for pediatric patients.
Or the doctor can say, those won't work for us, and they get offered to the next person on the list. Sent from my DROID3 using proboards
Post by orangeblossom on Jun 13, 2013 7:52:15 GMT -5
My friend and I were talking about this last night. His wife works in a pediatric intensive care unit (PICU). He was saying that while the rule sucks, it's in place for a reason. In general children children less than twelve don't have the amount of space to accept adult size lungs, and when you force them in there they don't work as well as they would in someone who is older.
It sucks all around, and sure the policy should be looked at, but that policy was put in place based on years of research.
Well, I think eveyone wants that. But it isn't going to happen. I mean you can't put the lungs of someone over the age of 12 in 3 year old you know? I am glad her life has been saved. However, I think organ donation has to abide by strict rules that can not bend to the will of a public relations campaign. Otherwise, you sully the process.
That was the reasoning behind the rule in the first place. But I saw an interview with a doctor on the news who said that advances in medicine have made it possible to take pieces of adult organs and "size them down" for pediatric patients.
Or the doctor can say, those won't work for us, and they get offered to the next person on the list. Sent from my DROID3 using proboards
Well, that is kind of fascinating. Do the lungs then grow so they would work for an adult as well? I wonder what the likelihood of that being successful is?
That was the reasoning behind the rule in the first place. But I saw an interview with a doctor on the news who said that advances in medicine have made it possible to take pieces of adult organs and "size them down" for pediatric patients.
Or the doctor can say, those won't work for us, and they get offered to the next person on the list. Sent from my DROID3 using proboards
Well, that is kind of fascinating. Do the lungs then grow so they would work for an adult as well? I wonder what the likelihood of that being successful is?
The interview didn't address that, but I'm curious as well!
"The reason kids get lower priority for lungs is that adult lungs rarely fit so you have to use only a part of one. Using only a lobe from an adult cadaver donor negatively impacts the chance of survival. And different medical problems such as cystic fibrosis create different odds for success depending on age.
The drugs used to keep a lung transplant working create special challenges in children as opposed to adults. Infections are a big problem with transplants and lung transplants to anyone with cystic fibrosis including Sarah are at the high end of risk. In fact, a third of all those who get a lung are dead after three years. None of which means that Sarah should not get a shot at a lung. All of which mean that no politicians or bureaucrat should make the call."
Side question, but this girl has CF which is a disease of the pancreas which means it isn't cured by replacing her lungs. She's probably going to need new lungs again in 10-15 years. Is that really the best candidate for a transplant?
Side question, but this girl has CF which is a disease of the pancreas which means it isn't cured by replacing her lungs. She's probably going to need new lungs again in 10-15 years. Is that really the best candidate for a transplant?
CF is not a disease of the pancreas. CF is a disease of the lungs. They don't make enough surfactant, which can make it hard for them to breath and very prone to infections.
Side question, but this girl has CF which is a disease of the pancreas which means it isn't cured by replacing her lungs. She's probably going to need new lungs again in 10-15 years. Is that really the best candidate for a transplant?
CF is not a disease of the pancreas. CF is a disease of the lungs. They don't make enough surfactant, which can make it hard for them to breath and very prone to infections.
Not to get too picky... but I did a report on CF in 7th grade but from Wikipedia
Cystic fibrosis (also known as CF or mucoviscidosis) is an autosomal recessive genetic disorder that affects most critically the lungs, and also the pancreas, liver, and intestine. It is characterised by abnormal transport of chloride and sodium across an epithelium, leading to thick, viscous secretions.[1]
The name cystic fibrosis refers to the characteristic scarring (fibrosis) and cyst formation within the pancreas, first recognized in the 1930s.[2] Difficulty breathing is the most serious symptom and results from frequent lung infections that are treated with antibiotics and other medications. Other symptoms, including sinus infections, poor growth, and infertility affect other parts of the body.
CF is not a disease of the pancreas. CF is a disease of the lungs. They don't make enough surfactant, which can make it hard for them to breath and very prone to infections.
Not to get too picky... but I did a report on CF in 7th grade but from Wikipedia
Cystic fibrosis (also known as CF or mucoviscidosis) is an autosomal recessive genetic disorder that affects most critically the lungs, and also the pancreas, liver, and intestine. It is characterised by abnormal transport of chloride and sodium across an epithelium, leading to thick, viscous secretions.[1]
The name cystic fibrosis refers to the characteristic scarring (fibrosis) and cyst formation within the pancreas, first recognized in the 1930s.[2] Difficulty breathing is the most serious symptom and results from frequent lung infections that are treated with antibiotics and other medications. Other symptoms, including sinus infections, poor growth, and infertility affect other parts of the body.
Interesting about the other affected organs, however, since it's the lungs that are mostly affected, should we go around saying that patients with CP cannot get lungs because they still have cyst formation in the pancreas. Slippery slope and all.
Not to get too picky... but I did a report on CF in 7th grade but from Wikipedia
Cystic fibrosis (also known as CF or mucoviscidosis) is an autosomal recessive genetic disorder that affects most critically the lungs, and also the pancreas, liver, and intestine. It is characterised by abnormal transport of chloride and sodium across an epithelium, leading to thick, viscous secretions.[1]
The name cystic fibrosis refers to the characteristic scarring (fibrosis) and cyst formation within the pancreas, first recognized in the 1930s.[2] Difficulty breathing is the most serious symptom and results from frequent lung infections that are treated with antibiotics and other medications. Other symptoms, including sinus infections, poor growth, and infertility affect other parts of the body.
Interesting about the other affected organs, however, since it's the lungs that are mostly affected, should we go around saying that patients with CP cannot get lungs because they still have cyst formation in the pancreas. Slippery slope and all.
The problem is that the cyst formation in the pancreas is what causes the symptoms to appear in the lungs. So the new lungs will still have the same problems eventually.
Interesting about the other affected organs, however, since it's the lungs that are mostly affected, should we go around saying that patients with CP cannot get lungs because they still have cyst formation in the pancreas. Slippery slope and all.
The problem is that the cyst formation in the pancreas is what causes the symptoms to appear in the lungs. So the new lungs will still have the same problems eventually.
There are many diseases in which the patient's new organs may ultimately fail again due to underlying conditions, but I don't see CP as being any different. It's why there are transplant rules and teams in place to assess the feasibility of organs.
The family and we as the general public may not always agree with UNOS and transplant team centers, but that's what they're there for.
There are actually data on lung transplants for CF patients. Statistically, they are not beneficial at all. In some patients where the lung involvement is the biggest problem they can be, but overall, there is not an improvement in life span.
news.yahoo.com/lung-transplants-controversial-cystic-fibrosis-patients-140058226.html In a 2007 study, researchers at the University of Utah examined the risks and benefits of lung transplants for cystic fibrosis patients. They looked at 514 children with cystic fibrosis on the waiting list for a transplant, including 248 who did receive a transplant. Less than 1 percent of the transplant patients benefited from the procedure, the researchers concluded. About half of the patients in each group died; there was no evidence that those who received transplants lived longer, the researchers said. The average survival time was 3.4 years after the transplant, and about 40 percent lived for at least five years after the transplant.
(but)
Some patients do much better after a lung transplant because the lung damage is the driving factor behind the illness,Franco said. "Once you fix that part, everything else is much easier to take care of," she said.
I'm ambivalent about this ruling. I truly hope this is a great life extender for the little girl, but hope more that we can devise better treatments for a truly dreadful disease.
The problem is that the cyst formation in the pancreas is what causes the symptoms to appear in the lungs. So the new lungs will still have the same problems eventually.
There are many diseases in which the patient's new organs may ultimately fail again due to underlying conditions, but I don't see CP as being any different. It's why there are transplant rules and teams in place to assess the feasibility of organs.
The family and we as the general public may not always agree with UNOS and transplant team centers, but that's what they're there for.
When MIL had her liver transplant she had to do test to show it was just her liver, not underlying illness causing damage to the liver etc.
But she wasn't at the bottom of the list because she has CF and transplants aren't as effective for CF, she was at the bottom of the list because of her age which may or may not have made her too small for full adult lungs, which may or may not have been feasibly cut down to fit her. If the refusal was for her condition and not solely her age, according to this anyway, the family would have accepted that.
So I have a relative waiting for new lungs. This kid just basically bumped her because she has better PR?
I find this whole story kinda gross, especially the political angle.
from what i've gathered from what i've read/seen/heard, the little girl was extremely critical and would have died within a week or 2. that's what bumps you to the top of the list.
IIRC, she was at the top of the pediatric list as well but those are so rare that she would have died before a compatable set became available.
I used to work in the country's most active pediatric lung transplant program. Early in the program, children would get adult lungs that would have to be shaved to fit the smaller chest cavity of the child. Overwhelmingly, children who got adult lungs did much more poorly and had much shorter survival than children who received appropriate size lungs. This is one of the reasons that the changes were made to limit children 12 and under to child donors. This way, a valuable, limited resource wasn't "wasted"--an adult could get the lungs and live much longer than a child who might get the lungs.
It bothers me to see this sort of judicial interference. This recommendation/guideline was made for a reason, you know?
Interesting about the other affected organs, however, since it's the lungs that are mostly affected, should we go around saying that patients with CP cannot get lungs because they still have cyst formation in the pancreas. Slippery slope and all.
The problem is that the cyst formation in the pancreas is what causes the symptoms to appear in the lungs. So the new lungs will still have the same problems eventually.
No, the pancreas has nothing to do with lung involvement. In fact, depending on the mutation, there are patients with very little pancreatic issues who still have bad lung pathology. It causes a problem with cellular sodium channels, making the normally thin lung mucus very thick and viscous. Your lungs can't move that mucus up and out like they can normal mucus, so bacteria and such can get a foot hold and cause infections, leading to scarring, etc.
I used to work in the country's most active pediatric lung transplant program. Early in the program, children would get adult lungs that would have to be shaved to fit the smaller chest cavity of the child. Overwhelmingly, children who got adult lungs did much more poorly and had much shorter survival than children who received appropriate size lungs. This is one of the reasons that the changes were made to limit children 12 and under to child donors. This way, a valuable, limited resource wasn't "wasted"--an adult could get the lungs and live much longer than a child who might get the lungs.
It bothers me to see this sort of judicial interference. This recommendation/guideline was made for a reason, you know?
But why 12? My daughter was larger than many adult women at age 12. Why not go by size?
I used to work in the country's most active pediatric lung transplant program. Early in the program, children would get adult lungs that would have to be shaved to fit the smaller chest cavity of the child. Overwhelmingly, children who got adult lungs did much more poorly and had much shorter survival than children who received appropriate size lungs. This is one of the reasons that the changes were made to limit children 12 and under to child donors. This way, a valuable, limited resource wasn't "wasted"--an adult could get the lungs and live much longer than a child who might get the lungs.
It bothers me to see this sort of judicial interference. This recommendation/guideline was made for a reason, you know?
But why 12? My daughter was larger than many adult women at age 12. Why not go by size?
Most children who need lung transplants have CF, and your normal 12 year old CF patient who is sick enough at 12 to need lungs might be the size of an 8 year old.
It's just where the numbers played out when they looked at data from all over the country.
I had remembered reading that lung transplants don't extend life much for CF. The same underlying mucous issue will affect the next set. Although, yes, that's not enough to say they don't deserve them as the hep c liver example shows.
I'd be ok if they were going by size rather than age. 12 does seem arbitrary. But even more arbitrary is giving a transplant to a child because their parents worked the media. There's something squicky about this particular case, although I'm actually somewhat hopeful that it could cause a discussion on whether there is something that needs to be updated about the policy.
Why was she at the bottom of the adult list? Is it because of time spent on it? Or is it because there were other candidates just as critical but with better expected prognosis?